#TEAMGLUTENFREE is at it again! I am running for the 2020 Virtual charity challenge. Since being diagnosed with Celiac Disease…
My mother is a good mother and always did everything a mother is “supposed to do” for her kids. She raised us properly. To know the difference between right and wrong. Rarely feeding us store-bought junk. Regular visits to the dentist. Always enrolled in extracurricular activities and sports, she was always sure to attend. Doing all this while always worked more than one job. Taking a night course to keep her skills relevant she was an advocate for continuing education.
She also believed in the system … Doctors …
Mom would take me to the doctor whenever I had a complaint or asked. I have never liked the doctor so if I asked to go; I meant it.
How many time have you wanted to make a doctors appointment because a symptom you have been silently suffering has finally worn you down?
I constatly delayed making the appointment because you thought it was pettyand i knew they would be dismissive. Big deal you have some dandruff OR your joints hurt so bad you don’t want to move. I was a kid, I had been to the doctor many times for the same things but never seemed to get better. My symptoms were always dismissed because I was labeled a troubled child of divorce. Often that was the focus of any counseling session or doctor appointment. To date I have not left a doctors appointment without am anti depressant prescription.
As a child I experience severe dandruff.
I would strap bags of frozen peas to my head, cry or run outside barefoot and dive head first into a giant snowbanks. When I developed joint pain so terrible in my knees I stopped loving my favorite sport, swimming.
Eventually what you experience becomes the norm so I stopped “complaining”.
Doctors and dermatoligists couldn’t stop the itchy painful scalp. I questioned and doubted myself. I tried all kinds of prescriptions for my dandruff and joint pain. Often advised told to just take 4 Advil 4 times daily. All I needed was an anti-inflammatory. Of all the physiotherapy and shark cartilage pills nothing alleviated the pain. The medical professionals always dismissed my complaints saying I was simply stressed and depressed.
Symptoms starting mounting, I started self medicating.
I started complaining about my oral health despite my regular oral hygiene regime. I was referred to an oral specialist. I now had irreversible bone loss in my jaw, receding gums. When I consume gluten I get canker sores.
I experience periods so heavy they can’t be controlled by feminine hygiene products. This only amplifies the low iron issue. I have constantly inquired about my sexual health and fertility. Testing shows no abnormalities yet fertility is always in question.
I have been told I have IBS and most recently “possible” microscopic colitis because of my severe constipation/diarrhea.
I have had many episodes of fainting which was chalked up to borderline diabetes. Resolution… just eat a piece of cheese or sugar when I feel faint.
In 2008 I experience chest pain so severe I thought I was having a heart attack
As I lay paralyzed in pain on the floor. This was dismissed as dramatic over reaction and just a severe case of acid reflux.
Shortly after the chest pain episode within the year, I had my first eruption of severe psoriasis on the palms of both my hands. Eventually, both my hands were bound and use of my hands was restricted for more than 3 years. I experience turmoil at work due to the inability to perform basic tasks including things like feed or clean myself, yet this was not observed as a disability to prevent me from working so I continued hands bound and often bleeding.
At this point, I had completely lost all faith in the medical systems and professionals… I took to research.
I had done so much reading and every angle I went on always lead to celiac disease, So I made one more doctors appointment to propose they test me for celiac disease. I plead my case with the doctor that perhaps celiac is why my psoriasis won’t heal with any perceptions. My family has roots in Finland and Ireland England. Places known for gluten intolerance.
Finland is considered a gluten-free heaven so I hear.
I illustrated to my doctor some medical history highlights of my family that are also closely related to celiac including but not limited to Alzheimer’s/ dementia, diabetes, arthritis, gout, dermatitis, mood/psychiatric disorders, autism, Crohns and Colitis, and more. My doctor laughed and said I was hypochondriac that no-one has celiac, it’s so rare. (my doctors’ office also runs a diabetes management clinic, which alarms me they have never heard of celiac in their office the two are often associated)
My Doctor finally ordered a blood test. The results came back inconclusive …
This can happen if you go gluten-free before a test its skews the results. After that I felt completely deflated I thought I had found the root a starting point for recovery and healing. I still believed I should not eat gluten but went off and on a gfree diet for years doubting myself without the test or support from medical professionals.
A few years later my sister became very ill and was hospitalized. She was then diagnosed with ulcerative colitis and celiac disease (most recently monitoring for MS and Lupus) She gave a little chuckle when the Doc told her.
He explained this was a very serious diagnosis and not a laughing matter.
She filled him in. The laugh was because her older sister (ME) has always been preaching the gluten-free. Always preaching we all have celiac and no-one would believe her, now look. The next week my colonoscopy/endoscopy was booked. Also monitoring me for Crohns , microscopic colitis and lymphoma.
Shortly after in 2015, I was diagnosed with Celiac disease.
I was told I have a serious condition called Celiac Disease, not much is know about it. I should see the hospital dietician and follow up with the CCA for any questions or info. Meeting with the Dietician at the hospital was a blast to the past. The information was outdated and the foods suggested to eat were very unhealthy options comprised mostly of processed foods.
After diagnosis, it really compelled me to continue advocating for myself and others who do not have a voice.
Continually striving to be responsible for my own health and body. Continue educating myself to make the best decisions for me. The diagnosis has really propelled me into a healthy lifestyle of learning and healing. I continue to research celiac and how my overall long-term health can be improved. I share my experience stories and glutenfree lifestyle on this blog. I also continue to advocate for access to safe food through my fundraiser GFREEWIFEY FOODBANK.